Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Feb 5, 2021
Date Accepted: Jun 15, 2021
Date Submitted to PubMed: Aug 12, 2021
(closed for review but you can still tweet)
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Anticipated benefits and concerns about sharing hospital outpatient visit notes with patients in the Netherlands: a mixed-methods study
ABSTRACT
Background:
The past few years have seen a rise in interest in sharing visit notes with patients, or "Open Notes".
Objective:
We sought to gather opinions about sharing outpatient clinic visit notes from patients and hospital physicians in the Netherlands, where there is currently no policy or incentive plan for shared visit notes.
Methods:
We conducted a survey of patients and doctors, as well as "think aloud" interviews to elicit more insight into the reasons behind participants' answers.
Results:
We surveyed 350 physicians and 90 patients, and interviews were conducted with an additional 13 physicians and 6 patients. A majority of patients (77%) were interested in viewing their visit notes, while a majority of physicians (82%) were opposed. A majority of patients (60%) expected the notes to be written in layman's language, but most physicians (60%) did not want to change their writing style to make it more understandable for patients. Doctors raised concerns that reading the note would make patients feel confused and anxious, that the patient would not understand the note, and that shared notes would result in more documentation time or losing a way to communicate with colleagues. Interviews also revealed concerns about documenting sensitive topics such as suspected abuse, and unlikely but worrisome differential diagnoses. Physicians also raised concerns about fragmenting the patient record. Patients also were uncertain if they would understand the notes (51%), and in interviews raised questions about security and privacy. Physicians did anticipate some benefits, such as better patient recall of the visit, shared decision-making, and keeping patients informed, but 24% indicated that they saw no benefit. Patients anticipated that they would remember the visit better, feel more in control, and better understand their health.
Conclusions:
Dutch patients are interested in shared visit notes, but physicians have many concerns which should be addressed if shared notes are pursued. In hospitals where shared notes are implemented, the effects should be monitored (objectively, if possible) to determine if the concerns raised by our participants have actualized into problems and whether the anticipated benefits are being realized. Clinical Trial: n/a
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